Luke just started this today! I am so proud of him. Please disregard my talking because I sound like a dork.
Also, sorry but it was with my camera phone so it is blurry.
I found some cool stuff this week.
First I found these low fat fudge bars. YUMMY!
Then today I found these cute sunglasses that are 100% uv protection and strap so that Luke can't take them off. He wasn't too happy that I had stopped to take this picture.
Here's a random picture of Luke. He was busy playing when I snapped it. 
Since Luke got his PIC line in a few weeks ago he has been constantly pulling on it and yanking it out of the bandage. Well this morning he finally had a victory! We try to make sure he doesn't mess with his PICC but since I was sleeping and he woke up without crying he had the perfect opportunity to unravel his bandage, pull on his PICC, and then successfully pull it out. I didn't know for certain if it was all the way out but whenever the nurse tried to draw blood from it it wouldn't drawback and then the fluids she was putting into just came back out onto me.
It is kinda frustrating because he only had 2 days of iv therapy left but it felt good whenever the doctor said that he didn't need to come in and they would just check it out tomorrow when he comes in for his CF checkup. I hope that this appointment goes well and I am pretty sure that it will. He hasn't been coughing that much (if you don't count his reflux cough) and he has been gaining some weight. The thing that I am concerned about is that he isn't eating very well. Today he has had only 10 ounces of formula, a yobaby, and a tub of bananas. Bananas and yogurt are 2 of his favorite things so I would have been super shocked had he not eaten them. I know that he will eat those so if all he is going to eat today is yogurt and bananas I guess I am going to go with it.
Here are some pictures of him that Dan's mom took Friday night when we went to their house.
Playing with his toys-
Getting into his toys-
Drool Baby!
Family picture, Dan isn't looking up in this one but I think that Luke looks cute :)
So I have nothing interesting to blog about so I thought that I would post some pictures of Luke that I took today. This was right after he tried tearing his PICC out. Talk about giving me a scare.
Talking to the light-
Laughing when I said Ribbit-
He just found his paci-
Trying to be stoic-
Crawling to MaMa-
So Luke seems to be doing great with his PICC line so far. I haven't made any major mistakes and his PICC isn't infected. His nurse comes by allot to take care of it and change the dressing but this is soooooo much better than staying in the hospital. We get to relax and be on our schedule and we also get to have privacy, something you don't get at all in the hospital.
Luke and I went to a ladies retreat this past weekend and it was great. It was so refreshing to be around other women that were there for the sole purpose of drawing closer to God. I haven't been able to go to church as much as I would like so getting the Word 3 times a day gave me a real spiritual jolt.
The speaker was great and every session hit home with me. One lesson was about having a quiet spirit while we are going through storms in our life. I struggle with this but I am learning to rejoice that I am going through the trials of life because these trials are making me stronger and more sensitive to God.
I bought some great books so I am super stoked get started on them.
On another note, I am very excited because Dan and I are starting to plan a trip to go see the Creation Museum next month. My mom wants to have a dry run taking care of Luke before September (my lil' sis and I will be going to Spain on a missions trip) and I thought that this would be perfect.
Actually, Dan and I need to get away. It's very hard to lose focus in our marriage with everything that is going on. I think that we need some time away to have fun together and not have to worry about when a certain medicine has to be administered or if Luke is feeling okay. My mom is so good with kids and she helps out with all the little grandkids allot. It is so nice for us to have her because she is one of the few people I trust to watch him. She is such a great example of what a mother and wife should be. I only hope that I can be half as great as her.
I will leave you with some pictures. Maybe tomorrow I will post some of Luke getting an infusion :)
Luke's PICC -not great quality because all are taken with my camera phone
Random pictures of Luke
This is the face he makes when he fake coughs.
looks like he has a lazy eye here!
I don't have much time but wanted everyone to know that we are back home and Luke seems to be doing well. He ended up culturing MRSA so he is on another 2 weeks of antibiotics. He may never get rid of it but we are trying!
Luke's infusions seem to be doing okay. I have done one all by myself and I must say that I was quite proud of the job I did. It's totally different when you are the one doing it.
I have to sign off though because the Home Nurse should be here soon and I am still in my pajamas!
Have a great day :)
So here are a few things that I have learned through my various hospital stays-
-Hospital food tastes rather bland and costs too much
-Yellow isolation gowns make me look fat
-There is nothing good on tv till 6:30pm (Wheel of Fortune baby)
-ER nurses need to get better with iv's
-Night nurses are cool (they let you get away with anything)
-Respiratory therapy is always late and there was always an emergency before your turn
-Babies scream when their iv blows
-My fingers get wrinkly when I wear gloves all day
-Residents don't really do any good, they always ask their Attending anyways who then decides to consult Pulmonology, it's much easier to bypass them all and go straight to you primary Pulmonoligist
-Student nurses don't know much
-The old ladies who teach the student nurses don't know much
-NEVER draw back on a PICC line (the blood clots, this I learned when the before mentioned student nurses did what there before mentioned teachers told them to and pulled back on Luke's PICC making us almost have to put a new line in)
-You need good wave patterns to get a good pulseox reading
-You need to lock BOTH locks in the parent showers (don't ask me how I know)
-The middle elevator going to 9West is going to breakdown one day and I am NOT going to be in it
-It takes about an hour to get a request to the nurse if you call her (she will never recieve the message because the slow person at the desk forgets to tell her)
-Isolation rooms rock
-Room partners always come at 1am, it creates a good bonding experience
-I look like death warmed over
-It's not a good idea to wait till you REALLY have to pee to go, there is usually someone in there by then and remember, you only have so many pairs of underwear
-Nurses rock
-Luke's doctors are the best
-This is the best place he could be
Most of these are silly things that I have really found out but seriously, the nurses and doctors here are great. They have done so much for Luke that is amazing.
Sorry for the ramblings!
Peace out.
So we had an interesting weekend which ended with us in the ER. Luke has a persistent cough that just won't go away with oral antibiotics so we are here at CMH so that his cough will go bye-bye.
He is on Tobrymiacin (sp?) and Zosyn some of the strongest antibiotics. We are hoping that he hasn't developed Psuedomonis and so we have to wait for the culture results. Luke is being a trooper though and flirting with all of the nurses. Thankfully he got his favorite nurse so all is good in Lukey land.
Here are some pictures of where we are.
His room
The view from his room -that's the Sears Tower and Hancock Building in the background!
Mr Peg Leg
Mommy and Baby- He's in isolation so I have to wear gloves and a gown. I am supposed to be wearing a mask but the Doctor said that I could slide this time. I couldn't imagine wearing a mask 24/7! Oh, and I look a little rough because there are no hair dryers here and even though I do my makeup it seems like it goes off really fast.
I thought that I would mention how it has been 10 years this Sunday since my father passed away due to ALS. It still hurts that he is gone but I rest in the fact that I am going to see him again.
I will always remember him and his unabashed way he witnessed to everyone he met. Nobody left my dad's presence without knowing how much he loved his family and his God.
These are a few things that have happened since he passed.
~I became a teenager
~I learned how to drive
~I graduated High School
~I became an adult
~I fell in love
~I got married
~I had a child
There are so many other things that I wish he could have been here for but I know that God is Sovereign and there is a reason. I try not to dwell on what he missed but on what he was there for like-
-my birth
-when i learned how to walk
-when i first talked
-my first day of school
-my salvation
-my baptism
-playing Saturday morning soccer (he was always faithfully there cheering me on)
-going on various family vacations to so many places in the US
-yelling from the car "RACE CAR DADDY!" who could forget that
I am just so happy that I had the time with him that I did.
I have a heritage I am proud of.
Thank you Mom and Dad. Dad, someday I will see you soon! I love you!
Dad and I right after I was born
When I was a few years old in Texas.
Lastly, a few months before he died- with me, Daniel, and Bethany.
So I know that I haven't posted in awhile but I am still here. Luke has not been feeling well lately and he has been keeping me quite busy. At first I thought that he was just teething but now a nasty cough has started up and he also has thrown up a few times. I think that the throw up is from the sputum because it is really gross and slimy and has this smell you never forget. He is now on antibiotics so hopefully we can knock this out fast.
My Great Strides campaign is going really well. I have raised half of my goal but I still need help getting to my goal. I would love it if I could have everyone I know give at least $5 to my team. I think that I would have the money in no time then! You can donate by clicking Luke's picture on the side and that will take you to my home page. I am so honored that people are giving money to help the Cystic Fibrosis Foundation.
Other than Luke being sick I have no real news. I guess my life is slowing done a little bit.
I hope that everyone enjoys their weekend!
